0 Recommendations
i'd like to know how many people have ollier disease. so plz reply and feel free to share your thoughts and stories advice and treatments if you have any.
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
ollier disease
- By patient101
- Posted September 23, 2009 at 5:06 pm · 6 replies
- In Finding emotional support
- Shared with the public
Explore topics in this discussion:
6 replies
- Oldest first
- Newest first
- By julia101
- Posted October 6, 2009 at 1:12 pm
- Report post
Hi. I was diagnosed with Ollier's in 2006 at the age of 36. Iv'e had three tumors removed in my femur and tibia and now have been told i have another on my pelvis. I have an MRI every three months to check for differences in size etc but so far its stayed the same.
Best wishes, Julia
- By gally
- Posted October 16, 2009 at 9:46 am
- Report post
I was just diagnosed at 50, with multiple lesions on my pelvis and on femur. Fell down the stairs,fractured my tibia and they happened to catch a glance. Having biopsy done shortly, and really have no idea what is in store for me--eg what new treatments are out there for replacement of a pelvis(doesn't seem to exist). Think I am in excellent hands at Sloan Kettering in NYC---Julia how did they remove your tumors and were they malignant?
- By julia101
- Posted October 16, 2009 at 10:22 am
- Report post
Hi gally,
They managed to cut out the tumors and made grafts from with my hip bone. They were all benign thank goodness. I also have a tumor on my pelvis which is quite large (i can see it) but at the moment their just watching it. Would be interested to know what treatments you receive.
Good luck with your biopsy, keep us updated on your progress.
Take care
Julia
- By Mummakaren
- Posted October 19, 2009 at 2:02 pm
- Report post
I was diagnosed with Ollier's at the age of 2. I am 36 now and have had many operations to help with the bones in my right arm. As far as I know I have it in just my arms ( a bone scan was done when I was 13 years old ) and as of then that is all they saw.
All of my operations I had as a child, I have had to have all over again. The tumors just keep re growing themselves in my bones.
This is the first time I have EVER found other's who have Ollier's like me.
- By gally
- Posted October 19, 2009 at 2:28 pm
- Report post
That's interesting as I am getting the impression that with these cartilage tumors the re-growth is the problem. Not sure what they are going to recommend as the tumors on my pelvis are extensive,and apparently this is a problematic area. but I have no pain,no other symptoms.How do you feel day to day? Where are you getting treated in London? thanks-- I feel very taken aback by this whole thing.
- By Slummymummy2
- Posted October 19, 2009 at 3:55 pm
- Report post
dear group, if you can get on to the other link about olliers that has approx 23 replies and you will find more about olliers and other people who are linked to it or have olliers... stay postivie and find out what you can about it and post your info on this site...
best love louise
ps, julia 101 , i hope you got my reply to you and the other lady in barnsley.. i am now going to try to find her on this website...
louise, aka slummymummy and slummymummy2 ..x
Add to the discussion